Hashtag: AlzQA

Dementia is a global challenge that is set to intensify. There are currently over 44 million people living with dementia worldwide, care for whom costs are an estimated US$604 billion.

As part of the online Q&A hosted by Alzheimer Disease International (ADI) on June 17, an expert panel will address questions about the global burden of Alzheimer’s disease – the most common form of dementia. Other topics to be discussed include risk reduction, caregiving and research.

Ward Health is proud to join Alzheimer’s Disease International (ADI), McMaster Health Forum, Men’s Health Network, and The Partnership to Fight Chronic Disease (PFCD) to host this online Q and A.

The expert panel will address:

  • Questions about the global burden of Alzheimer’s disease
  • On-going research with a particular emphasis on how family care givers as well as people with Alzheimer’s can become involved in the search for better treatments and cures
  • What has been learned about better, earlier diagnosis and prevention
  • What non-medical steps can be taken to prevent Alzheimer’s
  • What it means to be involved in a clinical trials
Dr. Serge Gauthier

Douglas Institute, Director of Alzheimer’s Disease Research Unit, McGill Centre for Studies in Aging. Professor, McGill University

Prof. Dawn Brooker

Professor and Director of the University of Worcester Association for Dementia Studies

Dr. Daisy Acosta

Dr. Acosta has dedicated her professional life to the study of Alzheimer’s disease and has a large clinical practice in the Dominican Republic focused on the care and treatment of people with dementia.

Dr. Patricio Fuentes

Cognitive Neurology and Dementia Unit, Neurology Service, Hospital of Salvador and Geriatrics Section, Clinical Hospital University of Chile

Marc Wortmann

Marc is in charge of all aspects of ADI’s work. Collaborating with the Board, Marc implements finance and campaign strategies. Marc represents ADI at international conferences and in the NCD Alliance and takes part in WHO and UN meetings.

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What lifestyle factors can help reduce the risk of developing dementia, or prevent further cognitive decline?
Asked by Steve Lott on Facebook
Submitted June 16, 2015 at 10:55am | PERMALINK
Answered by Marc Wortmann

Lifestyle factors that can help reducing your risk are mostly the same as for diabetes and heart disease: physical exercise, healthy diet, look after your heart by controlling blood pressure. A more specific risk factor is low education, so challenging your brain may help as well. Lots of information can be found in the World Alzheimer Report 2014 on dementia and risk reduction: http://www.alz.co.uk/research/world-report-2014

What proportion of caring for dementia patients is being borne by family care-givers?
Asked by Patients and Research on Facebook
Submitted June 17, 2015 at 10:50am | PERMALINK
Answered by Marc Wortmann

The majority of people living with dementia are cared for at home, by their families and sometimes friends. In the most developed countries, around 70% of them live at home, in the countries with fewer resources this is almost up to 100%. So family caregivers are key in supporting those with Alzheimer’s disease and other dementias.

Right after a diagnosis how can family and friends best provide support?
Asked by Silver Sherpa on Facebook
Submitted June 17, 2015 at 10:47am | PERMALINK
Answered by Marc Wortmann

The diagnosis can come as a shock, but sometimes also as a relief. Don’t be ashamed to ask for some help, family and friends don’t have to deal with this alone. It is important that the person who is diagnosed is not isolated; he or she needs help and love from family and friends more than ever. It might be useful to contact your local Alzheimer association for information or support groups, as you may have many questions.

My husband is diagnosed with dementia, but does not want to give up driving. I think it is dangerous, what can I do?
Asked by Anonymous on Web
Submitted June 17, 2015 at 10:44am | PERMALINK
Answered by Marc Wortmann

It depends a little bit on the stage of dementia. Some people with dementia are still able to drive in the early stage of the disease. It would be good to seek for a driving assessment. More and more countries have developed legal requirements about this issue, for instance the United Kingdom: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=144

There are some very good tips on the website of the Alzheimer’s Association: http://www.alz.org/care/alzheimers-dementia-and-driving.asp

And for Canada: http://www.alzheimer.ca/en/About-dementia/For-health-care-professionals/Driving

How are the rights of dementia patients protected if their families wish to see them involved in clinical trials?
Asked by Health Access India on Facebook
Submitted June 17, 2015 at 10:42am | PERMALINK
Answered by Dr. Serge Gauthier

The patient must agree to be part of a research study, even if he is incompetent to handle his financial affairs. This assent must be checked periodically through the course of a clinical trial. 

What impact has the G 8 Dementia Summit Declaration had on funding for research?
Asked by Med Innovation on Facebook
Submitted June 17, 2015 at 10:39am | PERMALINK
Answered by Marc Wortmann

A number of countries have increased their budget, for instance the USA, UK, Canada and Japan. The same happened in the European Union (especially under the Horizon 2020 programme) and in Australia as well. The American Congress asked the scientific community how much it would cost to find a cure by the year 2025 and it will be interesting to see this debate developing in the next months.

Can Alzheimer’s disease be prevented?
Asked by Mens Health Network on Twitter
Submitted June 17, 2015 at 10:36am | PERMALINK
Answered by Dr. Serge Gauthier

There are large studies under way to see if strict control of vascular risk factors (high blood pressure, diabetes, smoking, lack  of exercise) in mid-life (ages 40 to 65) can improve cognitive abilities and delay decline over time.  Other studies with amyloid-reducing drugs are being done in persons without symptoms but at high genetic risks. 

What progress is being made on developing new drugs to treat dementia?
Asked by Medical Innovation on Twitter
Submitted June 17, 2015 at 10:34am | PERMALINK
Answered by Dr. Serge Gauthier

The main drugs being tested are to decrease the buildup of beta-amyloid in the brain, but there are studies attempting to decrease the tau pathology, and others aiming at increasing brain transmitters’ activity.

Are there parts of the world where Alzheimer’s or dementia is less prevalent?
Asked by Anonymous on Web
Submitted June 17, 2015 at 10:28am | PERMALINK
Answered by Marc Wortmann

The most recent data on global prevalence of dementia are from 2013 (http://www.alz.co.uk/research/G8-policy-brief) and they show there is a bit of variance around the world.  Between 5-7% of all people over 60 have Alzheimer’s or other dementia, but unfortunately there is no country where it does not exist.

What is the global economic burden of Alzheimer’s and dementia?
Asked by Kristina Lybecker on Facebook
Submitted June 17, 2015 at 10:24am | PERMALINK
Answered by Marc Wortmann

This was calculated in the year 2010 at US$604 billion or 1% of global GDP. Less than 20% are medical cost, over 40% is cost for social care and 40% informal care that families provide. Most costs occur in the highest income countries in USA, Europe and Japan that already have an aged population. 

Mi madre se encuentra actualmente con medicación para #Alzheimer, pero quiere dejar. Qué recomienda usted? My mother is currently on Alzheimer medication but wants to stop. What do you recommend?
Asked by EvaMaria CancerPeru on Twitter
Submitted June 17, 2015 at 10:21am | PERMALINK

No existe tratamiento curativo para la EA, sin embargo los medicamentos antidemenciantes en uso pueden producir beneficios en habilidades cognitivas, conducta y funcionalidad hasta etapas avanzadas de la enfermedad. No se recomienda la suspensión brusca de estas drogas, porque pueden acelerarse o incrementarse los síntomas. Solo con una entrevista con el profesional tratante puede acordarse una conducta definitiva al respecto.

Abrupt discontinuation of these drugs is not recommended, because it may result in accelerated or increased symptoms. Consultation with a treating professional should take place before a decision to discontinue medication.  There is no cure for AD, however anti-dementia drugs can produce cognitive, behavioral and functional benefits until the onset of advanced stages of the disease. 

Is palliative care recommended for advanced dementia?
Asked by Global Health Aging on Facebook
Submitted June 17, 2015 at 10:18am | PERMALINK
Answered by Marc Wortmann

Palliative care is useful indeed for advanced dementia. It can improve the quality of life of people living with dementia, but also for their caregivers and families. A clear statement was made recently by the Worldwide Hospice Palliative Care Alliance:  http://www.thewhpca.org/latest-news/item/palliative-care-and-dementia-statement-worldwide-hospice-palliative-care-alliance

Estoy en mayor riesgo de desarrollar Alzheimer si uno de mis padres tiene la enfermedad? Am I more at risk of developing Alzheimer´s if one of my parents has the disease?
Asked by EvaMaria CancerPeru on Twitter
Submitted June 17, 2015 at 10:15am | PERMALINK

Efectivamente, existe un relativo mayor riesgo de presentar la EA si uno de mis padres o hermanos ha tenido la enfermedad. La contribución de los genes en el riego de presentar la EA de comienzo tardío (más del 95% de los casos) no se conoce con exactitud, excepto para el gen de la APOE que en una conformación particular incrementa el riesgo. Las formas dominantemente genéticas, es decir, donde la mayoría de los familiares presentan la enfermedad son muy raras.       

Indeed, there is a relatively higher risk of developing AD if one of your parents or siblings have had the disease. The contribution of genes present in the irrigation of late-onset AD (over 95 % of cases) is not known exactly, except for the APOE gene in a particular shape that increases the risk. The dominantly genetic forms, that is, where most of the family have the disease are rare.

How can families and patients get involved in research for dementia?
Asked by Cure Strategy on Facebook
Submitted June 17, 2015 at 10:12am | PERMALINK
Answered by Prof. Dawn Brooker

There is a huge need for more research into dementia to help find a cure; to understand the genetics; to understand how to delay onset or symptom progression or to find out how to provide the best care. Many countries are developing national programmes such as the UK’s Join Dementia Research initiative.

The national Alzheimer’s Societies and Associations will often be in a good position to signpost to ways to get involved. Likewise health services and universities will often be able to advise people of local studies that need volunteers. 

How is a Alzheimers/Dementia diagnosis confirmed?
Asked by Christopher Ward on Facebook
Submitted June 17, 2015 at 10:09am | PERMALINK
Answered by Prof. Dawn Brooker

Skilled diagnosis of dementia – particularly the rarer forms – does take time and may need referral to a specialist. As doctors are seeing more patients with dementia, and as tests improve their accuracy, the technical aspects of diagnosis are getting better all the time. 

El único método definitivo de diagnóstico de la EA es el examen del tejido cerebral obtenido de una autopsia. En vida, a través del método clínico, con entrevista personal del individuo y su acompañante, de examen físico y mental, de evaluación neuropsicológica, de exámenes de laboratorio y neuroimágenes el diagnóstico solo es probable o posible.

Clinical diagnosis is made through interviews with the patient and their companions and families, physical and mental examination, neuropsychological assessment, laboratory tests and neuroimaging.  But the only definitive method for confirming an AD diagnosis is the examination of brain tissue obtained from an autopsy. 

What's more important? Access to care or access to cure?
Asked by Dr Shibley on Twitter
Submitted June 17, 2015 at 10:06am | PERMALINK
Answered by Marc Wortmann

With regards to access to care or cure, neither of them is more important than the other. For those who have dementia now, good quality care is crucial as there is currently no cure. In the meantime, we need to increase efforts to find a cure by investing more funds into research.

Is progress being made on earlier and more accurate diagnosis of Alzheimer’s and dementia?
Asked by Abigail T. Fox on Facebook
Submitted June 17, 2015 at 10:03am | PERMALINK
Answered by Prof. Dawn Brooker

There has been a lot of progress in recent years both on earlier and more accurate diagnosis. There have been considerable advances in the ability of biomedical scientists to detect changes in people’s brains in what is known as the pre-clinical phase of Alzheimer’s Disease and vascular dementia. This is the stage when there have been early physical changes but not a change in the person’s behavior. We do not yethave a firm test that will predict progression to dementia or a treatment. Population screening is not recommended because of this.

When people are at the stage where they are aware of symptoms they will often still be a delay in receiving a diagnosis. Many people with dementia currently never receive a diagnosis and, while others do, it is frequently at a later point in their experience of dementia. Many factors are thought to influence this delay including: the significant stigma associated with dementia; the availability and accessibility of diagnostic services; the availability of interventions and support following diagnosis.  These factors have a profound impact both on the numbers of people seeking help and the point at which help is sought.

It is generally recommended that people come forwards for diagnosis when they become aware of persistent cognitive difficulties – a change from normal for them. There are a number of compelling reasons for supporting people to come forwards for investigation of cognitive changes: there are treatable reasons for cognitive decline. Investigations completed as part of the diagnostic process will ensure these are identified and managed promptly; there are established benefits from pharmacological and psycho-social treatments for some individuals following diagnosis. These do not provide a cure, but may help with symptom control; new pharmacological and psycho-social interventions are likely to have more benefit in the early stages; the person with dementia and their family have the opportunity to access information, make lifestyle adaptations and plan for the future during a period where cognitive processing is relatively intact; living well with dementia also involves processes of psychological and emotional adjustment during which the person and their family are able to make choices and attain control over the process of assessment, disclosure and receipt of post-diagnostic support, information and interventions.

In order to facilitate a process of adjustment and adaptation, it is proposed that diagnosis should generally occur earlier than is currently common practice, at a time when the person and their family can benefit most. The research literature on what is beneficial to people living with dementia and their families suggests strongly that it is desirable to have access to diagnosis at a time when people can use this information to make sense of what is happening to them, make lifestyle changes and plan for the future. The term timely diagnosis is used to reflect this.

Can you clarify the difference between Alzheimer’s disease & dementia?
Asked by McMaster Health Forum on Twitter
Submitted June 17, 2015 at 10:00am | PERMALINK
Answered by Prof. Dawn Brooker

Dementia is an umbrella term that covers all the different conditions and pathologies that cause dementia. Alzheimer's disease is the most common cause of dementia. 

We describe dementia as being present when a person is experiencing problems with their cognitive functions, for example changes in memory, finding words, recognising objects, carrying out practical tasks or making considered judgements. For a person to be diagnosed with dementia more than one of these problems needs to be present and they have to be sufficiently severe to have an impact of the person’s life.  Dementia is defined by a significant change from a person’s usual level of functioning, the underlying cause being one of a number of processes that affect the health of the person’s brain.

There are many causes of dementia. Alzheimer’s Disease, Vascular Dementia, Dementia with Lewy Bodies are ones that are most frequently mentioned.